Why We Walk: The Recap

Walk details:
The walk is on Saturday, August 27th. Our group will meet in front of the fountain outside the Fayette County District Court 9:15 and 9:30. A small ceremony will be held at 9:45 and then we will walk at 10. The walk is approximately two miles long, with a shorter mile loop for those who need it. See below for parking details from the Alzheimer's Association.
Our team will have North Lime donuts downtown to celebrate together after the walk. All are welcome!

Why we walk:
1. We walk to speak out.
2. We walk to support clinical trials and research.
3. We walk to support caregivers.
4. We walk to honor and value the sick and elderly in our community.

It's almost walk day and we are getting excited! Thanks so much to everyone for their love and support -- when I head downtown on Saturday I won't just be joining friends and family from nearby, but folks driving in from Louisville and Chicago. I'll be wearing the sweatbands that friends mailed us four years ago to let us know they're with us. I'll be thinking of an email my friend Brian sent when I emailed out about a previous year's walk, telling me he was keeping us in his thoughts as he studied to become a doctor, learning about the pathology and existing treatment options for Alzheimer's patients. I'll be thinking of friends who over the past years have driven far for other big (and small!) events - painting bedrooms, baby showers, even just coming up to grab a drink and keep us company. I'll be thinking of friends from elementary, middle, and high school who, though I haven't spoken to them in years, came out to walk in previous years or made donations this year to show our family love and support.

Thanks for giving us a space to share about Alzheimer's over the past month. The disease can be isolating and lonely -- you've allowed us to shine a light on different aspects of the walk, and the entire process has been incredibly encouraging for us. We are grateful for you and we'll be carrying all of your kind words and good vibes with us on walk day!

xo,
Ellie

(Click here to access our walk page, where you can register, donate, or leave a word of encouragement for our team.) 

Parking 
The following parking options are available to Walk to End Alzheimer’s participants: 
-Chase Tower Garage, 201 East Main Street Free parking 
-Hilton Hotel Garage, 369 West Vine Street - Free parking if you tell cashier you're with the walk when you exit 
-Courthouse Garage, 105 Barr Street - $1.50 if you pick up a discount voucher at our parking tent.

Why we walk, Week 4: Because getting older is not a bad thing

Do you ever find yourself bemoaning how old you feel?

I do it all the time, and I’m only thirty. It’s ridiculous on two levels – on the one hand, I’m still young – likely more than half of my life is ahead of me. But the second and more important absurdity is that my underlying tone is negative; my statement is a couched slight toward the elderly.

Earlier this week I listened to the podcast ‘On Being’ andheard Krista Tippett speak with Xavier Le Pichon, a renown geophysicist and humanitarian. He spoke candidly about his experience caring for his mother who suffered from Alzheimer’s, and in that same segment mentioned the “all people are part of humanity…humanity is not complete if you have some parts out". (See below for the full quote.)

This week I’ve been reflecting on how Alzheimer’s disproportionately affects people who are older, in their last season of life. I’ve spoken often about how this isn’t just a fated illness that happens to our elderly, or a normal trajectory of aging for many. And yet, as I speak about Alzheimer’s I feel that this point needs to be reiterated, time and again.

Part of the challenge is that individuals with Alzheimer’s literally fade away in language and personality. It is easy, and almost default, to brush them aside as their memories fade – to shift to loving them in a paternalistic and patronizing way. (I so often hear in Alzheimer’s support groups “well they’ve just become so sweet and like a child.” Even the other day on Facebook I saw someone comparing a frustrated Alzheimer’s patient to the behavior of an angsty teen.) Our tendency to push individuals aside is not just because of their illness, but also because our culture views aging as something negative – something to avoid and dread.

As I write this it’s important to acknowledge and confess here that I am not just pointing at “society”. For those who have watched our Alzheimer’s walk videos, you’ve likely noticed how I sometimes speak to Mom as though she is younger or a child -- coaching her through the videos and helping her string together broken thoughts.

On my best days I am slowing down, helping her connect pieces, building up who she is and fighting for her to find her words and find herself. But on my worst ones I am chiding her, rushing her – impatient and eager to get out the door. I’m angry that she isn’t more capable, frustrated that she’s holding me back. I am just as prone to diminish and treat her in a childlike manner, and thus find that I have to constantly fight against the natural impulse to ignore and minimize my mother’s value as an older and sicker person.

While I’m continually grappling with my innate impulse to think of aging as a negative, Alzheimer’s also forces me to consider aging in stark contrast to the dread often associated with growing older. I am perpetually reminded in small ways of the richness and beauty of old age that has been stolen from my mother.

She and I have been robbed of the sacred season when parent and child have the potential to become good friends.

She can’t hope to watch her grandchildren grow or find fulfillment in imparting wisdom to them as they navigate their transition to adolescence and adulthood. 

I’ve tried to cram in a few bucket-list trips with her – to Greece and Spain and Maine. But I know that if my mother had a normal retirement, that she and I might have had years worth of annual road trips ahead of us. I often day-dream of the national parks tour-that-might-have-been  – camping under the stars, scaling mountains, and descending into valleys bursting with wildflowers.

So while I mourn the reality of our situation and the fact that Mom’s golden years have been shortened, I concurrently seek to fight back against the impulse to dismiss the elderly, the vulnerable. 

I try by seeking to counter this in the everyday moments.

Before I snap at Mom for asking me a question five times, I try remind myself of how scary it must be for her to lack a full grasp on time – yesterday and how it relates to tomorrow.

Before I get frustrated that I have to spend my only free hour of the day making my Mom’s monthly calendar or planning meals for such a big family, I try to remind myself of all the unexpected bursts of joy I get to catch each day; I get daily glimpses of Mom huddled in a tent with Asher in the living room or walking Moss until he dozes off to sleep.

Our family is attempting to remind ourselves that aspects of our life are sweeter and more abundant because we have such a mixed age group living under the same roof. And as we prepare for the walk, we are reminding ourselves and others that our society should exalt and honor individuals in every phase of life. We walk to remind ourselves that our aging mothers and fathers, grandmothers and grandfathers, are no less cherished or important than our children. This week, we walk to remind ourselves of the inherent value of each soul – even those who are seemingly fading away.

We walk to bolster the spirit of discouraged Alzheimer’s patients – to assure them that memories aren’t just housed within our own minds, but that they are flowing through our community – embedded within stories carried by the neurons and synapses of their children - stored deep within the souls, the glorious vessels of their grandchildren – vibrant and dancing in the laughter that emerges when longtime friends gather to reminisce. 

We walk to remind Alzheimer’s patients – young and old - that they are still with us and will remain with us long after their memories can no longer be recalled within their own minds. We walk for them on Saturday, and we will carry them with us through the next generation and beyond.

We hope you’ll join us.

(Click here to access our walk page, where you can register, donate, or leave a word of encouragement for our team.) 

Human people are not adults in full possession of their means. Human people — it starts with babies, it continues with growing people, it continues with adults, it continues with older people, and with great age, and people who die. All of that is part of humanity, and humanity is not complete if you have some of these parts out.

And the way to build the society is the way to integrate these people in a way in which they can interact and each of them can find out that they have their place, that their life has a meaning, that they are needed by the others. So often I have found, for example, among very old people that they have the impression that they are not useful anymore. Nobody needs them. And then they want to go. They want to go. So there is this problem that the society cannot live by itself if it doesn't recognize that it's heterogeneous and highly diverse.

Why We Walk, Week 3: To Support Caregivers

This week I want to write about the ups, but mostly the real challenges

of caregiving. I could get really rambly (and this post is by no-means short), so I've divided my thoughts into four key takeaways I'd share if I had to summarize -

1. Caregiving is complex.

One of the greatest daily challenges for Charlie and I surrounds naptime for our kiddos. Asher naps from 11am-1pm, a time of day that I’ve come to dread. I can boil the source of this angst down the basics – it is nearly impossible to keep Mom from going upstairs or clamoring around the house during this time frame. A simple ‘please be quiet for the next two hours’ doesn’t work because she forgets, or she remembers but gets hungry, anxious, etc.

I’ve gotten wise over the years. I now make her sandwich before Asher goes down for his nap so that I don’t have to worry about it mid-way through the nap. I know to try and find an activity to occupy her time during that span. But even with all of these preemptive steps – some days this doesn’t go right and Asher gets woken up, or I get angry at Mom for being loud and nearly waking him up. The base-level, all-consuming anger grows not only at the tangible repercussion of waking up a toddler from his nap, but also from a deeper resentment that this is something I have to mitigate for as a new mom. Feelings of -- 

Isn’t being a new parent challenging enough?

 or

deep jealousy of other women who get help from their Mom are constantly bubbling below the surface.

This particular challenge is unique to our scenario. Many Alzheimer’s caregivers aren’t among the sandwich generation (those of use caring for children and parents). However, with Alzheimer’s each individual’s trajectory of memory loss is different – so I’m sure each caregiver you speak with could describe a specific, very particular challenge that throws their quotidian activities for a loop.

2. Caregiving is isolating. 

Early on I read the book A Bittersweet Season: Caring for our Aging Parents and Ourselves by Jane Gross, and I remember her highlighting the Catch-22 of how ‘no one in your social circle really wants to talk about the day to day things you’re doing because they are mundane and depressing, but on the other hand it is your entire world and you don’t have much else to talk about’ (paraphrasing here, couldn’t find the exact quote).

While the language is strong, I’ve found this to be mostly true. All of my friends ask and genuinely care, but it’s difficult to listen to someone share for an extended period of time about a helpless situation. It’s hard to sit with someone and hear about a painful experience and not know what to say. And, on my end, it’s hard to be vulnerable and speak openly about this during casual hangout times. The combination lends to often feeling like there isn’t a good, carved-out space to talk about the challenges – but that also often leaves me feeling totally void of anything to contribute when out with my other twenty-and-thirty-something friends, as caregiving (and now, parenting) has come to feel all-consuming.

3. Caregiving is un-sexy. 

I always think back to my favorite part of David Foster Wallace’s ‘This is Water’ when I use the term unsexy.

The really important kind of freedom involves attention and awareness and discipline, and being able truly to care about other people and to sacrifice for them over and over in myriad petty, unsexy ways every day. 

Alzheimer’s caregiving feels like the definition of the unsexy kind of love – the constant repetition, endless patience, and tiny-detail-esque management and guidance you provide is all-consuming and often unseen.

4. Caregiving is a calling that is central to maintaining healthy community.

I believe strongly in the centrality of community; I believe relationships and caring for one another are the most important thing we can contribute to throughout our lives. So, when Mom received her diagnosis I couldn’t see any other option than to move home. My career to date has been in the non-profit sector, and I can’t help but think that if we had less brokenness and abandonment of family and our immediate community, that there would be less need for the type of work that I do.

(Please know that I absolutely am not saying here that I think everyone is obligated or responsible to care for their immediate family member XYZ if they are sick, as relationships are complex and deep and there is so much involved.) But, what I do know is that I felt that I was in a position where I could help Mom and knew that it was the right thing to do. However, the decision to do the right thing meant embracing a significant shift for what I’d expected my late 20’s/early 30’s to look like.

Sometimes the hardest thing to do is the smaller, daily calling that is right in front of you. My community has been different but rich because of my role as caregiver. Overall, I’m grateful for how my experience as a caregiver has led me to deepen my dependence on my community and has forced me to embrace how to live in a more honest and authentic way.

(Click here to get to our walk page if you'd like to join us or donate to our team. Thanks!)

Why We Walk Week 2: To Support Research and Clinical Trils

Clinical trial.

Often when I hear those words my heart sinks and my stomach knots up, as it can imply an underlying sense of despair – an illness without a definitive cure. 

Mom was in a clinical trial for eighteen months, potentially taking a medication that focused on untangling that tau proteins that gum up and ultimately cause a break-down of her neural connections.

During the actual trial, much of the experience felt perfunctory – a constant ‘going through the motions’…answering the same questions –

 rank how your mother is able to do the following  -- 
- laundry?
- hygiene?
- reading a newspaper or book?

Every month I would robotically answer ‘with some assistance’ or try to hide the pang of sadness in my voice as I shifted an answer from ‘with some assistance’ to ‘not at all’. Life felt like a perpetual cycle of idle moments in fluorescent lobbies, halfhearted grins covering our sensed-impotence as we answered survey questions, and brilliant, multi-colored daily pill bottles filled to the brim with dull tan and bland white medicines – taunting us. (Are they real? Or is it just a placebo?)

And then, all of a sudden – the trial ended. I quietly wrote about this previously and tucked it away on the blog. But to reiterate – it was an incredibly painful moment, one that unexpectedly forced me to stare hardship in the face when I least expected it. I remember throwing my sunglasses on during my drive home that day, in spite of the overcast weather, to hide my tears from Mom. I hadn’t realized we’d reached the end of the study. (I thought we’d had another two weeks to a month, so I hadn’t mentally prepared for it to end.) Even worse – our exit appointment was poorly organized and I was pressed for time. This resulted in being told that Mom had tested too low to be considered for any other studies in quick, terse sentences as we were hurrying out the door. It felt like someone was pulling off the proverbial band-aid I’d placed on the much deeper laceration, one caused by the hopelessness underwriting the trajectory of this disease.

So, this year for the walk email I’m about to send out, I can’t include an upbeat or chirpy line about Mom’s participation in a clinical trial.

The reality is she no longer qualifies for any of the ongoing trials in our area.

While that was always going to be the case – that a cure wouldn’t get to market in time for her - having to face this harsh reality has not become less painful over time. I’m grateful for other simpler, fun, and engaging study opportunities. I’m grateful for adult day centers that keep Mom engaged and programs that provide activities for individuals to continue to stimulate their minds.

But, more than anything, I fluctuate between searing anger, debilitating hopelessness, and pat acceptance over the fact that a cure doesn’t currently exist. And so, in the meantime we walk to end Alzheimer’s because a portion of the funds will be applied to other clinical trials and research initiatives. We walk so that other families can have hope in the immediate term, and so that ours can continue to draw on hope that countless others (including our wonderful boys) will be spared from having to grapple with this wretched disease.